109) Calling all caregivers, how are you?

This is a post dedicated to the caretakers/parents caring for a family member/child with chronic and/or life threatening illness.

How are you doing?  How are you feeling? How has life been treating you of late? Yes, YOU.

As a caretaker/parent, I don't think we have enough people inquiring into our emotional welfare and asking us these important questions (and sticking around long enough to truly LISTEN to the answer) because we are expected to be resilient and capable (plus the lives of our chronically ill loved ones depend on it). Even if we had someone sincerely asking us these questions, it becomes so hard to answer. There is fear that the answer won't be understood and will result in intensified feelings of alienation, or that it will be judged, or that any words we find will fail to describe the complexity of the experience of caring for a person with chronic and/or life threatening conditions.

In my work life as a clinical psychologist, I truly love my work and feel privileged to be entrusted with the innermost thoughts and feelings of my patients. I specialize in working with adults with severe trauma (mostly childhood abuse and neglect) so witnessing and holding their pain can be a heavy burden. Even though I am a professional, I'm sure it has taken a toll on me over the past 25 years. In spite of the challenges of working in a profession that is intimately involved in witnessing and trying relieve the intense suffering of others, I would still say that "I go to work to relax."

In my home life as a cranio mom, like many of you, I deal with the stress involved in the high maintenance care of managing my kid's chronic health problems and overall functioning. To prove my point, I could provide a long list of all the tasks my husband and I do to keep him alive and optimally well but I am tired (right now) from doing them ad nauseam day in and day out and listing them will make me feel even more tired (so I will spare us all but perhaps you know the list or have your own hellish version of that list). As equally (or even more?) difficult as dealing with the known daily challenges, is the disquieting anxiety that weighs in my mind about his unknown future (what happens after high school, what would happen to him if we weren't here to do what we do to keep him alive and well, will he ever be able to live independently, what will happen to him after we die?)

What is the toll of being a caretaker for a loved one with chronic illness? There is of course the toll on our resources- namely energy, time, and money. There is only a limited amount of resources one has and when so much energy has to be devoted to keeping a chronically and/or acutely sick child alive and optimally well, there's little leftover to be enjoyed. We are 6.5 years into this journey and man, it is a marathon!

Besides the obvious drain on these resources, there is also an impact on our own mental and physical health. Although I choose to take care of my son because I love him and will do everything in my power to provide the best life for him, I would be lying if I told you that it always puts me in a good mood. Hah! Sometimes I catch myself feeling and behaving very irritably because I am exhausted, cranky to the core, and resentful in my reluctant role as a (lame) understudy for his front lobes, pituitary gland and hypothalamus. Those of you who have a kid with poor executive functioning, poor memory, no hormones, and a non-working thirst mechanism will understand what I mean! And this is our life AFTER getting the benefits of oxytocin for his HO and hyperphagia. I am very well aware that we are very fortunate to no longer have to deal with the incessant hunger pangs, food stealing, and the resultant lifestyle of food locking and policing. Our lives were WAY harder before oxytocin but it is still far from easy.

Circling back to my original question, "how are you", I think one of the biggest tolls of special needs parenting/caregiving is the impact on relationships. If one is partnered or married, there is hopefully another parent/caregiver present to share the responsibilities of caregiving but the division of labor with caretaking duties are often not fairly shared between partners. If so, resentments may build up and the tenuousness of an already strained relationship can cause that relationship to falter and fail in the face of the daily stressors of special needs parenting/caregiving. Some marriages form stronger bonds in the face of these crises while other couples default into becoming mere co-parents to their special needs kid. The entire family's dynamics are bound to become affected by the "identified patient" (using a family therapy term) and siblings of the ill child may get lost in the shuffle and have to find their own way while their parents busy themselves with keeping their ill child alive and optimally well.

In my role as a caregiver, I have found myself becoming increasingly isolated from friends. As an extrovert, I have always put a lot of importance in my friendships and social life. Before he was diagnosed with the brain tumor, we had a very active social life with our many family friends. Over the years, I have let many of these friendships dissolve. A major reason for this was due to our need to protect Sasha from eating to excess (before we discovered oxytocin). After years of turning down social invitations from friends, many of these friends stopped inviting us, and who can blame them? Although the food issues played a significant role in our diminished social life as a family, I can't blame it all on the food. I must admit that I have isolated myself because having a child with Sasha's problems has made it painful (at times) to be around his (healthy and typical) peers and their parents. Poor social motivation for peers on Sasha's part has also increased his (and our) isolation since he has become more and more an outsider as the years have gone by. When I see his peers develop in normal and typical ways, it reminds me of what Sasha could have been had he not been sentenced with craniopharyngioma, and it makes me sad. I still have hope for Sasha and will continue to do what I can to optimize his life and future but I can't help but feel grief when I consider the healthy life he no longer has. I guess you could say that seeing his peers and being around their families fills me with a longing that I don't wish to feel. Avoiding these friends isn't the answer, I know, but I guess it's something I've done to cope with our circumstances, for better or for worse.

I am writing for myself to explore the emotional impact of living as a caregiver and to share these thoughts and feelings as it helps me feel less alone. I'd also like to invite my readers (you?) to share your thoughts and feelings about being a caregiver. If you've been feeling cooped up with your thoughts and feelings and want to share about your experiences as a caregiver, feel free to do so. Maybe it will help you feel less isolated, too?

So... how are you doing? How are you feeling? How has life been treating you of late?